Exhaustion

[nancy66]

Does anyone suffer from extreme exhaustion, both on or not on Biologics. I can't even walk a very short distance some days the exhaustion is just too much and daily activities are a huge challenge. Any tricks or suggestions of what can help with this debilitating exhaustion

[sylvi]

Nancy,pacing is the word you want. I can tell you its very hard to do. Do a bit sit a bit and then do a bit more. I also use a electric scooter to get about as i can't do a lot of walkng. They are very useful, if you want to go to the shops,you use you scooter to get there,park outside and then you can do a bit of walking round the shop and then you can use your to go to another shop.

Best of luck. Sylvi.xx

[nancy66]

thank you, i hate this, as do we all

[sciqueen]

Hi

I agree with Sylvi, its hard, but its all about pacing. Listen to your body and when your tired go and rest - we don't have a choice. As when we don't listen flare time. I hate the disease for the amount of down time we suffer, recovering from this and that, whilst life seems to pass us by. Still comes back to pacing.

Good luck and I hope your fatigue lessens with time.

Sci x

[Gina_K]

Hi Nancy,

We all know fatigue on here, can only re iterate listening to your body & pacing.

Multivitamins do help or B complex, I find. How are your bloods not that that really matter because mine are normal and I still feel totally exhausted by times. I am on anti tnf and that mad tiredness I had before diagnosis has gone.

I remember being in a shop and being unable to even look through a rack of clothes, as my arms were too tired to lift!

I am a lot easier on myself these days, and stop when I have too, and don't care about what others think of me. I also take offers of help .

Regards, Gina.

[nancy66 in reply to Gina_K]

thank you. my blood work is all normal, was hoping something would show up to help but it didn't. did you find the anti tnf helped some, i am debating on them. it is so discouraging isn't it. i also have cut down my work load, but a single mom of two still requires alot of work. the worst thing is not being able to walk far and always planning according to energy.

thank you, nancy

[Gina_K in reply to nancy66]

Cymbalta, has really helped me, I never get really down much about RA, it also helps greatly with pain. That is my experience.

[Hidden in reply to nancy66]

Nancy, if Biologics are an option for you, by all means inquire and try one. Most everybody on them tells stories of getting back to near normal. Studies are now reporting that Biologics sre being used much sooner instead of waiting until damage to joints has happened. Not worth the wait!! All the best, Loretxx

[helixhelix]

I agree that the fatigue is one of the things that's really hard to deal with, especially as hard to explain to people that I really need to sit down NOW. I had really difficulty getting to grips with the whole idea of pacing, as it sounded to me like giving things up. So now my motto is the classic 'don't sweat the small stuff', so I abandon the things that I don't really care about even if it causes others to raise eyebrows. So if people drop in & find me still pottering in PJs at 11 in the morning, and with spider's webs festooning the corners - well tough! And I don't do things for too long, so lot's of short breaks. And strange tho' it is, but a bit of (very) gentle exercise daily has helped too. I think it's meant that I've slept better too. I'd got into bad ways of getting overtired, but not sleeping well, so relying on coffee & chocolate to get me moving, which made it all worse and meant I slept even worse & so it went on. But getting the RA under control also helps - so do think about biologicsa if theyre on offer for you. Px

[nancy66 in reply to helixhelix]

thank you, so the biologics helped with the fatigue. By what you said i feel i get the same way you do, it feels like if you dont sit now you are going to pass out? i hate it, this is new for me, i could always fight through the fatigue before, now i can't , it controls me, and i hate it.

[helixhelix in reply to nancy66]

no I'm not on biologics as as yet I'm not considered to have "failed" badly enough on DMARDS, but others have said they make a difference. And I've found the worst thing is to try to fight the fatigue - as I then end up wiped out totally. So I try to work with it - hence to bed at 9.30 last night, as I really really wanted to lie down. And now bouncing about bright and early. Causes slight havoc at times not being able to plan things precisely but it works for me!

[Gina_K]

Well done Helix, I try to be like that too. It is v hard those cob webs they just scream for my cleaner to dust them lol. My one luxury is a cleaner twice a month just to do bathroom and floors. Her name is Florrie ( flrenka) and I seriously love her, she cleans so much better than me. I can't afford a cleaner, but I make everyone chip in after all as I say, I married you darling and I don't remember signing a cleaning contract that day..... That shuts him up... And he chips in as he prefers to play golf than clean...

Gina.

[cathie]

Pacing and also planning. I try to think the most efficient way of doing things, how it links with buses and perhaps cafes. I used to have to identify loo stops but that gut wrenching condition has moved on. I also read that a 20 minute sleep in the middle of the day was more beneficial than a longer one.

I envy gina her cleaner but a plan to try a couple of hours with the woman who comes to my daughter fell through this morning. At least I did clearing out last night so the place looks superficially clean!

[oldtimer]

Do a bit and sit down, do a bit and sit down....if it's sitting down work then I even set a kitchen timer, so that I don't do more than an hour at a time before getting up and stretching these joints, then sitting down again. I now know much more about the birds in the garden from sitting down and watching them.

But it's difficult. I go on Walking for Health walks (an easy walk for an hour) when I can. But sometimes I just have to drop out because I have to sit down NOW . Sometimes on the pavement or the grass. Sometimes propping myself against a wall is enough. Don't be embarrassed - just smile!

[kathgallagher]

I have every sympathy with you. I have been off work for three weeks due to pain and exhaustion. my gp bless him thought i needed some time out and I am only just starting to feel, better. I agree with the girls that pacing is important and if you need time off take it because they won't think any more of you if you crawl to work. Take Care

[tiger]

I am extremely tired 99% of the time. I had my bloods done yesterday and I have no problems with my inflammatory markers (ESR 1, CRP 0,4!!). I have had Rituximab infusions (the last being in April 2011) but my GP is convinced that the tiredness in my case is due to the MTX, it is certainly doing its job in keeping the RA at bay but it certainly makes me shattered. Over the last 3 months I felt as if all my limbs are really heavy like they are made of lead and I ache all over as if I have flu - but I don't. I was talking to the medical co-ordinator at work about this and he suggested accupuncture, which he specialises in. Anyway I had the fourth session this morning and I have to say all the achy feeling has gone, I still feel tired but as he says I need to be 'cool' at work and not race around feeling that I am failure if I don't get everything done but easier said than done - as everyone says it is about pacing - just a bit difficult to put into practise!

[helixhelix in reply to tiger]

Ooooh, can I have a pint of your blood? I didn't know the levels got down that low..... Px

[tiger in reply to helixhelix]

Neither did I , was a bit shocked when I saw them on the email (they send me the results by email the same day). To be honest I am wondering whether there has been an error! Am going to Toulouse tomorrow to see the rheumatologist so I am sure he will enlighten me. Even it is correct I am still absolutely cream crackered all the time. Hope that you are doing OK. Wx

[pinkdee]

i agree pacing yourself is the only way. it does my head as i used to be so active and now barely have the energy to do what i have to do yet alone all i want to do. my friends think ive lost the plot when i pass on nights out as i will be sound asleep before they are planning to leave the house but hey ho. i also find trying to stay positive helps a bit

[cherry2]

Hi, for me its probably the worse part- the exhaustion. I was hoping that when i started on anti tnf it might improve but sadly not and now the doc's say that alot of people say it dosent help with that side of things. Pacing at home- well i try but its hard- pacing at work dosent happen so end up exhasted- its impossible. I long for a day when i wake up feeling i have even a small amount of energy, and no one really seems to understand- i guess you cant see lethargy!

[elsa123]

All this is new to me, but I am trying really hard to change a lifetime habit of rushing and getting to places at the last minute.

I am getting up earlier so that I can take more time to get things done.

This has resulted in me getting to work 5 minutes early instead of by the skin of my teeth and out of breath.

Everything seems such a battle at the moment.